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SYS-CON MEDIA Authors: Dana Gardner, Elizabeth White, Jnan Dash, Kevin Jackson, Peter Silva

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Inspiring Patient Advocates Sit at the Table With Drug Industry Leaders at DIA Meeting

A young father who blogs about his fight with stage 4 melanoma and a mural artist who struggled to access her cancer-stricken husband’s medical records will share their unique perspectives with the professionals responsible for the research, development and regulation of drug therapies at the DIA 2014 50th Annual Meeting.

T.J. Sharpe, of Fort Lauderdale, Fla., and Regina Holliday, of Grantsville, Md., are among the patient advocates with a one-of-a-kind opportunity to present with drug industry leaders at the DIA Annual Meeting from June 15 to 19 at the San Diego Convention Center. They will discuss their experiences with urgent issues facing patients, such as enrollment in clinical trials and access to electronic medical records.

“Each patient advocate presenting at the meeting has a compelling story of determination and resilience, and there is no other meeting in the world that joins these forces together to accelerate health care solutions,” said Barbara L. Kunz, DIA global chief executive. “A key focus of DIA is to put the patient first when facilitating vital collaboration between industry, research and regulatory arenas.”

Philly.com’sPatient #1” blogger Sharpe, who was the first patient in the world to undergo an experimental sequence of treatments to fight his cancer, will be sharing his experience in clinical trials when he speaks at a session on “The Patient Point-of-View: An Unrehearsed but Revealing Conversation to Rectify Patient Enrollment,” scheduled for June 18 at 10:30 a.m. Presenting at the DIA Annual Meeting is an opportunity for Sharpe to speak directly with those who spearhead research that can save his life.

“I am the luckiest guy in the world with cancer: I was able to get into not one, but two clinical trials to study milestone drugs,” Sharpe said. “Speaking at the DIA Annual Meeting allows me to share my story with an audience of professionals who make treatment a reality.”

Holliday will highlight a new initiative, the Blue Button Project, which will pioneer patients’ access to their electronic medical data, helping them track their progress and providing them the ability to share their information among specialized care teams during treatment. She will share her story of facing hurdles to access her husband’s medical data after he was diagnosed with inoperable kidney cancer — data that Holliday says could have changed the course of his treatment. The “Enabling Participants’ Access to the Electronic Clinical Trial Data: The Blue Button Project” session will be held on June 17 at 1:30 p.m.

“If we had been able to fully access my husband’s data, we could have changed his treatment — he might be in remission, or we could have made informed decisions about surgery or considered hospice care,” said Holliday, whose husband died in June 2009, less than 12 weeks after he was diagnosed. “I want to share my story with professionals at the DIA Annual Meeting who are dedicated to learn from us and work with us to drive treatment for those like my husband.”

On June 16 at 4 p.m., Holliday will host The Walking Gallery, bringing patient stories to life through narrative paintings on jackets worn by patient advocates, survivors of disease, caregivers and others who have lost loved ones to illness.

Other patient advocates who will be presenting at the annual meeting include:

ABOUT DIA: DIA is the global connector in the life sciences product development process. Our association of more than 18,000 members builds productive relationships by bringing together regulators, innovators and influencers to exchange knowledge and collaborate in a neutral setting. DIA’s network creates unparalleled opportunities for the exchange of knowledge and has the interdisciplinary experience to prepare for future developments. DIA is an independent, nonprofit organization with its global center in Washington, D.C., USA, and regional offices covering North and South America (Horsham, Pa., USA); Europe, North Africa and the Middle East (Basel, Switzerland); and Japan (Tokyo), India (Mumbai) and China (Beijing). For more information, visit www.diahome.org.

ABOUT DIA’s 2014 50th ANNUAL MEETING: Celebrate the Past – Invent the Future is the largest multidisciplinary event that brings together a community of life sciences professionals at all levels and across all disciplines involved in the discovery, development and life cycle management of medical products. The meeting aims to foster innovation that will lead to the development of safe and effective medical products and therapies for patients. For more information, visit www.diahome.org/dia2014.

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